foods to avoid with amyloidosis and amyloidosis | MyAmyloidosisTeam

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Real members of MyAmyloidosisTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

Top 10 search results for "foods to avoid with amyloidosis" in Q&A. To see all results and access other features, sign up for free.

I Have Very Severe Poly Neuropathy What Can I Do? I Have To Use A Walker Nerve Damage Re EMG. Sudden Severe Pain Back Of Legs
A MyAmyloidosisTeam Member asked a question 💭

calf and hamstring muscles severe pain when standing or trying to walk

Foods To Avoid With Amyloidosis Read Article...
A MyAmyloidosisTeam Member

watch that your BP doesn't go too low if it does take hydrocortisone see Endocrinology amyloidosis specialist. Do your ankles swell feet etc do your retain fluid ? Do you take Lasix water pill. Whaya… read more

Organ Specific Primary Amyloidosis Can You Explain This Condition?
A MyAmyloidosisTeam Member asked a question 💭
A MyAmyloidosisTeam Member

I am suffering from primary Amyloidisis affected on kideny filtration so creatine increased to @8

Will The Site Be Putting Up Any New Material In The Resources Section? Some Of The Material Is From 2021… Maybe A Little Outdated 🤷🏻‍♀️
A MyAmyloidosisTeam Member asked a question 💭
A MyAmyloidosisTeam Member

Sean I’m sorry you’re not getting what you need from this site. I might have to agree to disagree on some of your points. I wish you the best on this journey we’re all on.

AL Amyloidosis W/ Neutropenia
A MyAmyloidosisTeam Member asked a question 💭

I have read that people with AL amyloidosis who have neutropenia may need to avoid foods that are more likely to cause infection. Soft cheese, blue cheese, mayonnaise, raw eggs, and yogurt are foods that can contain higher levels of bacteria. So, should drinks like kombucha be avoided as well ? Could that be a cause of rectal bleeding w/ bowel movements ?

A MyAmyloidosisTeam Member

Ask your specialist. Don’t follow online advice from lay people.

Does Anyone Else Have Balance Issues?
A MyAmyloidosisTeam Member asked a question 💭

My husband who was diagnosed about a year ago, but who has had symptoms of CATTR for +12years has severe balance issues. Originally they were blamed on vestibular neuritis, but seem to worsen ever more frequently with "bouts" of imbalance and falls. Sometimes there is LOC, other times he is just soooo tired that he falls down. Drs seem to just shake their heads and seem to imply it is a separate issue
Has anyone else ever had inner ear nerve damage attributed to the amyloidosis?

A MyAmyloidosisTeam Member

I had a stroke in Cerebellum that I thought was cause of balance issues ( don’t know when), but I think it may be related. Had gotten worse lately. I have CM ATTR so it may have triggered the stroke.

What Foods Or Nutrients Are Contraindicated While Taking Vyndamax. Obviously Sugar And Salt Head The List. Al Sobel
A MyAmyloidosisTeam Member asked a question 💭
A MyAmyloidosisTeam Member

Hi Rob, Thx for your response. I have Congestive Heart failure (Diastolic muscles) complicated by Amyloidosis which results in Edema. I wear compression stockings daily and take Bumetanide ( water… read more

I've Been Subscribed Jardiance Along With My Vyndaquel. Is Anyone Else Using This Drug, And Have You Seen Results?
A MyAmyloidosisTeam Member asked a question 💭
A MyAmyloidosisTeam Member

I take Jardiance and Vyndamax. My cardiologist says it might help ejection fraction.

Has Anyone Taken Tafamidis And Gotten Better?
A MyAmyloidosisTeam Member asked a question 💭
A MyAmyloidosisTeam Member

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I Am Wondering If I Should Continue To Take Tafamidis As I Am In Stage Iiib Advanced Heart Failure?
A MyAmyloidosisTeam Member asked a question 💭

I have be taking Tafamidis since March 2022 with no positive changes. I was thinking that due to my advanced heart failure I may not see any benefit by continuing to take Tafamidis.

A MyAmyloidosisTeam Member

You should stay on meds. It helped my brother a lot. He got a heart transplant las November after thanksgiving and he is doing so good now. I hope I get a prescription soon.

I Have Cardiac Attr An I Am On Vydamax. Lost Lots Of Muscle Mass Used To Be College Football Player. Is This A Symptom Any Advice?
A MyAmyloidosisTeam Member asked a question 💭
A MyAmyloidosisTeam Member

Thank you Gents.. appreciate the info on diets! Hopefully will get some back.. I love liver!!